big data, big headaches: data privacy in the genomic era
DESCRIPTION
A history of data sharing starting from the Human Genome Project and the privacy concerns emerging from genomics research.TRANSCRIPT
Amye Kenall Development Manager, Open Data
BioMed Central
Big Data, Big Headaches Data Privacy in the Genomic Era
SpotOn London November 14, 2014
1990 1996 2009 2014
Human Genome Project
Bermuda Principles
Toronto Data Release Workshop
NIH issues Genomic Data Sharing Mandate
2000 2003
Human Genome cannot be patented says Clinton
Human Genome Project Completed
©Mike Schatz
Solving Cancer (the Haussler slide)
As data generation grows, concerns for privacy grow
Technology can’t protect our identities
Where we are now?
Personal Genome Project
89% felt it had benefited their research; 55% said application process was more
difficult than expected, and 27% said the data quality was lower than expected
Data Sharing and dbGaP: A Survey of Practices and Opinions Among Human Geneticists. D. Kaufman, J. Bollinger, R. Dvoskin, ASHG 2014 Abstract
The Global Alliance
The stakes are high, because if we get it right we can create new opportunities to define diagnostic categories, streamline clinical trials, and match patients to therapy. We want to make sure this is done in a global manner, and with the highest standards for ethics and privacy.
Dr Tom Hudson, Chairman of the Executive Committee of the International Cancer Genome Consortium
Unanswered Questions
When to feed back to participants? Different privacy needs Who holds authority over data privacy? How will the law protect us from data
misuse and discrimination? Genetic Information Nondiscrimination Act, 2008 Genetic Information not a protected under UK Equality Act,
2010
How can we make data reuse of restricted access data easier for research and preserve privacy?
